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Page | 1 DEPARTMENT OF VETERAN AFFAIRS AND APDA SUMMER 2010 PARKINSON PRESS NEWSLETTER Consider the environment. Print newsletter as necessary. Coordinator’s Comments Summer is finely here! The Reno, Sparks, Carson City, Lake Tahoe APDA 2010 Walk-a- thon was a great success, despite 40 degree temperatures, wind and some snowflakes. The APDA I&R Center raised approximately six thousand dollars and we are still taking donations. All of the money raised through the Walk-a-thon goes to fund Parkinson Disease research. Renown Health helped by sponsoring our t-shirts for the walk. Swire Coca Cola donated water for walk participants. Local businesses contributed raffle prizes for our walkers and donor participants. A good time was had by all! Both Laurel and I would like to thank all who volunteered their time and effort to make the walk smooth and successful. We look forward to planning the 2011 Walk-a-thon to raise even more money for Parkinson’s disease research. Sincerely, Susan Gulas, R.N., M.S.N. APDA I&R Center Co-coordinator and Laurel Lindstrom, R.N., M.S. APDA I&R Center Co-coordinator In this Issue: Coordinator’s Comments– page 1 Veteran Update page 2 Questions and answers page 3-5 What’s New page 5-9 Research Opportunity page 9-10 Upcoming Educational Events page 10 Northern NV Support Group Schedule page 11 Contact information and Disclaimer page 12

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Page 1: DEPARTMENT OF VETERAN AFFAIRS AND APDA SUMMER 2010 ... · Patients with atypical parkinsonism or "parkinson's plus" syndromes do not respond to DBS. If there are features in the history

P a g e | 1

DEPARTMENT OF VETERAN AFFAIRS

AND APDA

SUMMER 2010 PARKINSON PRESS NEWSLETTER

Consider the environment. Print newsletter as necessary.

Coordinator’s Comments

Summer is finely here! The Reno, Sparks,

Carson City, Lake Tahoe APDA 2010 Walk-a-

thon was a great success, despite 40 degree

temperatures, wind and some snowflakes. The

APDA I&R Center raised approximately six

thousand dollars and we are still taking donations.

All of the money raised through the Walk-a-thon

goes to fund Parkinson Disease research.

Renown Health helped by sponsoring our t-shirts

for the walk. Swire Coca Cola donated water for

walk participants. Local businesses contributed

raffle prizes for our walkers and donor

participants. A good time was had by all! Both

Laurel and I would like to thank all who

volunteered their time and effort to make the walk

smooth and successful. We look forward to

planning the 2011 Walk-a-thon to raise even

more money for Parkinson’s disease research.

Sincerely,

Susan Gulas, R.N., M.S.N.

APDA I&R Center Co-coordinator

and

Laurel Lindstrom, R.N., M.S.

APDA I&R Center Co-coordinator

In this Issue:

Coordinator’s Comments– page 1

Veteran Update – page 2

Questions and answers – page 3-5

What’s New – page 5-9

Research Opportunity – page 9-10

Upcoming Educational Events – page 10

Northern NV Support Group Schedule – page 11

Contact information and Disclaimer – page 12

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Veteran Update ● National Resource Directory Updated: The National Resource Directory redesigned and enhanced its website at www.NationalResourceDirectory.gov. Created for service members, veterans, wounded warriors, and their families and caregivers, NRD is a tool for service providers to reach out to the military and veteran’s communities. It provides access to thousands of services and resources at the national, state and local levels to support recovery, rehabilitation and community reintegration. The National Resource Directory is a Department of Defense (DoD) and Department of Veterans Affairs (VA) initiative. ● What is VA Pension for veterans? Go to www.vba.va.gov/bln/21/pension/vetpen.htm for information regarding the Veterans Pension Program.

● President Signs Caregivers Bill: President Barack Obama recently signed S. 1963 (The Caregiver's Bill) into law. The new law creates support program for veteran caregivers that will provide training, financial assistance, and improved respite service. The new law also improves health care services for America's women veterans, expands the mental health services provided by the Department of Veterans Affairs, and expands supportive services for homeless veterans. Details of the new law can be found at http://thomas.loc.gov/cgi-bin/bdquery/z?d111:S1963:/

● Vet Business Opportunities Expanded: President Obama recently signed executive orders that focus additional resources on providing new opportunities for small businesses to compete for federal contracts. One of the executive orders is dedicated to assisting veteran-owned small businesses. Also, the Air Force Small Business Program seeks to increase the awareness of how small businesses make an invaluable contribution to Air Force mission, including veteran-owned small businesses. For more information about the Air Force Office of Small Business, visit www.airforcesmallbiz.org.

● VA Updates Application Form: Veterans will find it easier and faster to apply for their health care benefits now that the Department of Veterans Affairs updated its online Form 10-10EZ, “Application for Health Benefits.” Veterans may complete or download the 10-10EZ form at the VA health eligibility website. Veterans may also contact VA at 1 (877) 222-8387 (VETS) or visit the VA health eligibility website: https://www.1010ez.med.va.gov/sec/vha/1010ez/

● Aid and Attendance Benefit: Few veterans are aware of the Aid and Attendance benefit that may be available through the Department of Veterans’ Affairs. For those who qualify, up to $23,396 in annual funding could be awarded to a veteran or the veteran’s spouse, in cases where the following conditions are met: (1) the veteran must have 90 days of active military service, with one day during wartime; (2) any nondishonorable discharge; (3) age 65 or older, or disabled; and (4) a need for assistance in activities of daily living.

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● VA Benefits Guide Now Available: The Department of Veterans Affairs’ 2010 guide to “Federal Benefits for Veterans, Dependents, and Survivors” is now available on line@ http://www1.va.gov/opa/publications/benefits_book.asp

● Care for Women Veterans: The Department of Veterans Affairs offers a comprehensive webpage on the VA care and benefits that are available to women veterans. For more information go to http://www1.va.gov/womenvet/

● Foster Homes for Veterans: VA’s Medical Foster Home program finds a caregiver in the community who is willing to provide a Veteran with 24-hour supervision and personal assistance. This would be a long-term commitment, where the veteran may live for the remainder of their life. Veterans who enter the Medical Foster Home all meet nursing home criteria. The veteran pays the caregiver $1200 to $2500 per month to provide this care. This includes room and board, 24 hour supervision, assistance with medications, and any personal care. For more information, visit VA’s Medical Foster Home webpage at http://www1.va.gov/GERIATRICS/Medical_Foster_Home.asp.

1. What makes you a “good candidate” for Deep Brain Stimulation (DBS) surgery?

According to Dr. Ahlskog, The Parkinson’s Disease Treatment Book, you may be a good

candidate for DBS if you fit into one of the following categories:

severe tremor is your most troublesome problem and it can’t be controlled with

medication

you have levodopa-induced dyskinsesias that are severe, disabling, and cannot be

reduced by lowering your medications without resulting in unacceptable parkinsonism

fluctuations in your levodopa response result in much parkinsonian off-time that

cannot be controlled by medication adjustments.

Guidelines for referring neurologists from UCSF Department of Neurological Surgery are:

Clear diagnosis of idiopathic PD. Patients with atypical parkinsonism or "parkinson's

plus" syndromes do not respond to DBS. If there are features in the history and physical

that are suggestive of atypical parkinsonism (such as very rapid progression of

symptoms, autonomic failure or postural instability as early features of the disease, signs

of cerebellar or pyramidal dysfunction) or an MRI suggesting an atypical syndrome,

surgery is contraindicated.

Intact cognitive function. A good screening test is the mini-mental status test. A score

of >26 is ideal, < 24 an absolute contraindication. Patients with cognitive dysfunction

have difficulty tolerating awake surgery, may have permanent worsening of cognitive

function postoperatively, deal poorly with the intrinsic complexity of DBS therapy, and

realize little overall functional gain even if motor performance is improved. In borderline

cases, we obtain formal neuropsychological evaluation.

Clear evidence of motor improvement with sinemet (carbidopa-levodopa), with

good motor function in the best on-medication state. A good screening test is the

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Unified Parkinson's Disease Rating Scale (UPDRS) part III, performed in 12 hours off of

medication and repeated following a supratherapeutic sinemet dose. We require at least a

30% improvement in this score with sinemet. The patient should be ambulatory in the

best on state without much assistance. In general surgery makes the "off" states more

like the "on" states but rarely does better than the best "on" state, so a patient with poor

function in best "on" (for example, nonambulatory in best "on") is a poor surgical

candidate. Patients who fluctuate between good motor function while "on" and poor

motor function while "off" are usually good surgical candidates.

Lack of comorbidity. Serious cardiac disease, uncontrolled hypertension, or any major

other chronic systemic illness increases the risk and decreases the benefit of surgery.

Realistic expectations. People who expect a sudden miracle are disappointed with the

results, and become frustrated with the complexity of the therapy.

Patient age. The benefits of DBS for PD decline with advancing age, and the risks go

up. Patients over 75 are informed that their benefits are likely to be modest. We have

rarely implanted PD patients who are over 80.

Screening MRI of the brain should be free of severe vascular disease, atrophy that is

out of proportion to age, or signs of atypical parkinsonism.

Degree of disability. DBS is a poor procedure to rescue someone with end stage PD,

although these are the most desperate patients. It is also not appropriate for early PD

when the symptoms are very well controlled on medical therapy. Patients should have an

off-medication UPDRS-III score of > 25. The best time to intervene surgically is when

the patient is just beginning to lose the ability to perform activities meaningful to

him/her, in spite of optimal medical therapy. Often, this is associated with the

development of significant motor fluctuations, dyskinesias, or both. In a patient who is

still working, the time to intervene is before the patient is forced to retire on disability.

Ability to remain calm and cooperative during awake neurosurgery lasting about 2-

3 hours per side of brain. A helpful "screening test" for this is how well the patient

tolerates an MRI scan. For patients who are otherwise excellent candidates but could not

tolerate being awake for part of the surgery, it is possible to have the DBS implantation

under general anesthesia in our interventional MRI suite.

Willingness and ability to be seen for follow-up visits. Programming the DBS to find

the optimal stimulation settings is very much a trial-and-error process, and the patient

will need to be seen approximately once a month for at least the first few months after

surgery.

2. Does DBS help your brain to produce dopamine and does it help to slow or stop the

disesase?

DBS is presumed to help modulate dysfunctional circuits in the brain so that the brain can

function more effectively. This is accomplished by sending continuous electrical signals to

specific target areas of the brain, which block the impulses that cause neurological

dysfunctions. These targets are the ventralis intermediate nucleus of the thalamus (Vim), the

globus pallidus pars interna (GPi), and the subthalamic nucleus (STN).

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DBS of the STN has increasingly been recognized as an effective treatment for patients with

medically intractable PD because of its demonstrated safety and efficacy. It provides

consistent clinical benefit and can reduce dopamine replacement therapy requirements by 50

to 70 percent. While DBS provides symptomatic relief, it does not slow or reverse the

underlying neurodegenerative process of PD. (from www.neurosurgerytoday.org)

3. I am about to go to the dentist for several tooth extractions, what do I need to consider in

terms of having Parkinson’s Disease?

Our VA pharmacist said: Use of local anesthetics should be fine; their effects are local and

short acting. If you are on selegiline/rasagline do not use tramadol or methadone for post

procedure pain. Other narcotics such as codeine (in Tylenol #3), hydrocodone (in Vicodin,

Lortab), oxycodone (in Percodan, Oxycontin, Roxicet), propoxyphene (Darvon, Darvocet)

may contribute to memory impairment, confusion and/or constipation. Your pharmacist

should review all of you mediations prior to dental work or a procedure.

Some people may need to take antibiotic prophylaxis if they have any heart valve problems or

have DBS implantation or any other artificial implantable device or artificial part, such as a

prosthetic hip.

Other thoughts are: take your medications so that you will be able to sit in the dental chair

without excessive movement or discomfort. If you have problems with dry mouth or

excessive salivation and/or swallowing problems – let the staff know so that they can provide

supportive measures (moistening or suctioning) during the procedure.

Health Care Reform Update: On March 23, 2010 President Obama signed the Patient Protection

and Affordable Care Act (http://thomas.loc.gov/cgi-bin/bdquery/z?d111:H.R.3590:). The

Reconciliation Act of 2010 (http://thomas.loc.gov/cgi-bin/bdquery/z?d111:H.R.4872:) needs Senate

approval. The heath care overhaul package is a complex bill that will impact all Americans. There

are several provisions that are of interest to the Parkinson's disease community, including:

Creating a Cures Acceleration Network at the National Institutes of Health, supporting

translational research in the hopes of more quickly moving research from the lab into new drugs

and therapies available to patients. For quite some time, Parkinson’s Action Network (PAN)

has focused on this fundamental issue and we are excited to see a renewed focus on accelerating

therapies and drugs for Parkinson's and many other diseases;

Extending the Medicare Therapy Caps exceptions process until December 31, 2010 for

medically necessary outpatient occupational, physical, and speech therapy. Go to

http://www.parkinsonsaction.org/federal-initiatives/ssdi-medicare/medicare-therapy-caps

for more information.

Eliminating lifetime caps on benefits for all insurance plans 6 months after enactment of the bill;

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Eliminating annual caps on benefits for individual and group plans in 2014;

Closing the Medicare Part D donut hole by 2020, and providing a $250 rebate for all Medicare

Part D enrollees who enter the donut hole in 2010;

Prohibiting insurers from establishing eligibility rules based on health status, medical condition

(mental or physical illness), claims experience, receipt of healthcare, medical history, genetic

information, evidence of insurability, disability, etc.

Natural Therapies for Parkinson’s Disease by Dr. Laurie K Mischley is a new book available for

lending from our reference library. This resource book provides ―a glimpse of how one might look

at the disease from alternative perspectives‖ It is meant to be used in conjunction with

conventional medicine and while many of the recommendations have not been completely

investigated for efficacy, they were included because of their therapeutic potential (pg. 1-2).

Stavelo Reduction in Dyskinesia Evaluation – Parkinson's Disease (STRIDE-PD), April 1,

2010 — The US Food and Drug Administration (FDA) today notified healthcare professionals that

the agency is evaluating data from a clinical trial indicating that patients with Parkinson's disease

(PD) receiving treatment with a combination of entacapone, carbidopa, and levodopa (Stalevo,

Novartis) may be at increased risk for prostate cancer. The trial, called Stavelo Reduction in

Dyskinesia Evaluation – Parkinson's Disease (STRIDE-PD), is a randomized comparison of

entacapone/carbidopa/levodopa vs carbidopa/levodopa (Sinemet) in patients with PD. "At this time,

FDA's review of Stalevo is ongoing and no new conclusions or recommendations about the use of

this drug have been made," the MedWatch alert cautions. Healthcare professionals should be aware

of this possible risk, they add, and follow current guidelines for prostate cancer screening.

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/u

cm206363.htm)

Neupro Patch: April 23 - Belgian pharmaceutical group UCB said on Friday the U.S. relaunch of

its Parkinson's patch Neupro could be delayed by two years after U.S. regulators recommended

reformulation of the drug. Neupro, which is approved in the European Union for the early

treatment of Parkinson's disease, was removed from the U.S. market in 2008 because crystals had

developed in some patches. UCB has been in talks with the U.S. Federal Drug Administration

(FDA) about reintroducing the Parkinson's disease patch. The group estimated it would take two

years to reformulate Neupro, meaning it would not be able to resubmit the drug for FDA approval

before 2012. The FDA decision did not impact product supply and availability in Europe and the

rest of the world, UCB said.

Impulse Control Disorders Common in Parkinson’s Disease - HealthDay News: Impulse

control disorders (ICDs) are fairly common in people with Parkinson's disease and are associated

with several clinical and demographic variables -- particularly dopamine-replacement therapies,

according to research published in the May issue of the Archives of Neurology. Daniel Weintraub,

M.D., of the University of Pennsylvania School of Medicine in Philadelphia, and colleagues

evaluated 3,090 patients with treated idiopathic Parkinson's disease receiving routine clinical care to

ascertain the prevalence of four ICDs and study their associations with dopamine-replacement

therapies and other clinical characteristics. The researchers found ICDs (gambling, compulsive

sexual behavior, compulsive buying and binge-eating) in 13.6 percent of the patients, 3.9 percent of

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whom had two or more ICDs. ICDs were more prevalent in patients taking a dopamine agonist than

in those not taking one (17.1 versus 6.9 percent). Other characteristics independently associated

with ICDs included younger age, U.S. residency, unmarried status, cigarette smoking, levodopa use,

and a family history of gambling problems. "Dopamine agonist treatment in Parkinson's disease is

associated with two- to 3.5-fold increased odds of having an ICD. This association represents a drug

class relationship across ICDs. The association of other demographic and clinical variables with

ICDs suggests a complex relationship that requires additional investigation to optimize prevention

and treatment strategies," the authors write. "Larger epidemiologic studies in these other

populations are needed to examine the possible relationships between dopamine agonist treatment,

other clinical features and impulse control disorders," they concluded.

Parkinson’s Disease Across the Lifespan: a Roadmap for Nurses: This symposium hosted by

APDA, NPF, and PDF on May 21, 2010 is available free and on-line for one year and provides 7.5

credits of continuing nursing education. Go to http://support.pdf.org/nursing.

AMA Releases New Older Driver Safety Guide, March 15, 2010

Motor vehicle injuries a leading cause of injury-related deaths in seniors.

To help protect the lives of older drivers and make our roads safer, the American Medical

Association (AMA) today released a new Physician's Guide to Assessing and Counseling

Older Drivers. Motor vehicle injuries are a leading cause of injury-related deaths in adults over 65.

The fatality rate for drivers 85 years and older is nine times higher than the rate for drivers 25 to 69

years old. ―For many, a driver's license symbolizes independence and the decision to retire from

driving can have both practical and emotional implications on a patient’s life,‖ said AMA President-

elect Cecil B. Wilson, M.D. ―Physicians play an important role in the safe mobility of their older

patients, and we encourage them to make driver safety a routine part of office visits for their senior

patients.‖ The AMA’s guide can help physicians address the driving safety of their older patients

and better understand the public health issues involved. Topics covered in the guide include

screening, assessing functional abilities, handling evaluations and referrals, conditions and

medications that may impact driving, addressing safer driving, and counseling those who are no

longer able to drive. A section with worksheets and resources for older patients and caregivers is

also included. Older drivers have a higher risk of traffic fatalities for two reasons: Drivers

age 75 and older are involved in significantly more motor vehicle crashes per mile driven, and older

drivers are considerably more fragile and more likely to suffer a fatal injury in the event of a crash

than their younger counterparts. The Physician's Guide to Assessing and Counseling Older Drivers

was developed by the AMA in cooperation with the National Highway Traffic Safety

Administration (NHTSA). The guide is currently available online at www.ama-

assn.org/go/olderdrivers, and physicians can order a free hard copy to be available in four-six

weeks. Later this year, a Continuing Medical Education course for physicians will be offered on the

AMA’s Web site. For more information contact Leah Dudowicz, Public Information Officer, AMA

Media Relations, (312) 464-4813.

Are you wondering about Stem Cell Treatments? The International Society for Stem Cell

Research (ISSCR) has developed a web site which includes ―Top 10 Things to Know About Stem

Cell Treatments‖ and ―ISSCR Patient Handbook‖. We have all heard about the extraordinary

promise that stem cell research holds for the treatment of human diseases. Clinics all over the world

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claim to offer stem cell treatments for a wide variety of conditions. But are all of these treatments

likely to be safe and effective? The ISSCR provides information to help you evaluate these claims.

Go to http://www.closerlookatstemcells.org//AM/Template.cfm?Section=Home.

'Sound' science offers platform for brain treatment and manipulation

Arizona State University - The ability to diagnose and treat brain dysfunction without surgery, may

rely on a new method of noninvasive brain stimulation using pulsed ultrasound developed by a team

of scientists led by William "Jamie" Tyler, a neuroscientist at Arizona State University. The

approach, published in the journal Neuron on June 9, shows that pulsed ultrasound not only

stimulates action potentials in intact motor cortex in mice but it also "elicits motor responses

comparable to those only previously achieved with implanted electrodes and related techniques,"

says Yusuf Tufail, the lead author from ASU's School of Life Sciences. "In our study we used

ultrasound alone to directly stimulate action potentials and drive intact brain activity without doing

any kind of surgery," Tufail says. "Our method paves the way for using sound waves to study and

manipulate brain function, as well as to diagnose and treat its dysfunction." Tyler's students have

also collected data that suggests that repeated exposure to low intensity ultrasound does not pose a

health risk to rodents. "We examined many aspects of brain health following stimulation and found

that low-intensity ultrasound is safe for repeatedly stimulating the brains of mice," noted Anna

Yoshihiro, a neuroscience doctoral student in ASU's College of Liberal Arts and Sciences and co-

author of the journal article. Yoshihiro works to treat Parkinsonian monkeys and has achieved some

early success in treating epileptic seizures in mice using ultrasonic neuromodulation. Tyler believes

that there are a host of potential applications for ultrasound in brain manipulation. Besides basic

science and medical uses, ultrasound represents a core platform around which future brain-machine

interfaces can also be designed for gaming, entertainment and communication purposes because of

its noninvasive nature.

VA Research Offers Insight on Parkinson’s Disease Earth Times - Veterans and others with Parkinson’s disease who undergo deep brain stimulation

(DBS) may benefit from research co-sponsored by the Department of Veterans Affairs and

published recently in the prestigious New England Journal of Medicine. ―VA is proud to partner

with the National Institutes of Health on this research, the largest trial of its kind to date,‖ said

Secretary of Veterans Affairs Eric K. Shinseki. ―This and other ground-breaking research on

Parkinson’s disease ensure we provide the best care possible for Veterans with this common,

debilitating disease.‖ VA cares for about 40,000 Veterans with Parkinson’s disease. DBS is often

recommended for people who no longer respond well to medication alone. The new report shows

DBS is equally effective at either of two sites in the brain. Earlier results from the landmark study

appeared last year in the Journal of the American Medical Association, indicating that DBS overall

is somewhat riskier than carefully managed drug therapy but may hold significant benefits for

appropriate patients. In DBS, surgeons implant electrodes in the brain and run thin wires under the

skin to a pacemaker-like device. Electrical pulses from the battery-operated device jam the brain

signals that cause motor symptoms such as stiffness and tremors. Thousands of Americans have

seen successful results from DBS, but questions have remained about which of two stimulation sites

in the brain yields better outcomes. The new analysis finds both sites roughly equal for patient

outcomes relating to movement symptoms. There were subtle differences between the sites in terms

of cognitive skills and mood, but the clinical significance of the differences is not clear. Researchers

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will follow the study participants several more years to examine the relative benefits and risks of

each DBS approach.

Parkinson's Disease Work-Related Disability Assessment Form from The Parkinson's Action

Network (PAN). The form is available for download, go to:

http://www.parkinsonsaction.org/sites/default/files/InteractivePDDisabilityForm_final.pdf

Contact the center for a copy of the form is you are unable to download it from the internet.

It has been brought to our attention that people with Parkinson's may experience trouble seeking

Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits due to

inadequate documentation of symptoms in their medical record. This form may be helpful to Social

Security reviewers during the SSDI/SSI application process. It was created with the hope that it

will be used by both clinicians and patients as a way to document and track a person's symptoms

with particular focus on the symptoms that are most likely to interfere with one's ability to work.

The form is designed to supplement a patient's medical record and is not a Social Security

administration form or application. The form can be downloaded, printed, posted on bulletin

boards, discussed with doctors or support groups, and posted on-line. It is free for all to use. PAN

thanks Solvay Pharmaceuticals, Inc., now part of Abbott, for their generous support of the creation

of this important project.

Researchers in New Haven are trying to determine the early warning signs of Parkinson's disease, a chronic movement disorder. Preliminary results indicate that your sense of smell could determine your risk. If Parkinson disease is identified in the early stages, before much of the loss of dopamine neurons has occurred it will likely be more responsive to treatments to slow or even halt symptom progression. The loss of smell has been recognized as a possible early indicator of Parkinson disease. Many individuals with Parkinson disease are able to recall losing their sense of smell well before the onset of motor symptoms. Treating with neuroprotective therapies at the time when only the sense of smell is affected provides the opportunity to delay or even prevent the onset of more troublesome symptoms. Sister Ann O'Neill is among the 200 participants in the Parkinson Associate Risk Study (PARS) who are being monitored closely at The Institute for Neurodegenerative Disorders in New Haven. The study begins with a scratch-and-sniff test done at home. "We actually believe that a decrease in the sense of smell maybe an early sign of Parkinson's disease or other neurological conditions," Dr. Jennings said. "We are beginning to see very subtle indicators that we think maybe predictors for Parkinson's disease, specifically smell itself, maybe some early changes in the motor exam and even in the imaging," explained Dr. Jennings. The PARS study will attempt to show that Parkinson disease can be identified in its earliest stage. In the future early detection combined with neuroprotective therapy may make it possible for interventions to begin early in the disease and slow the progression or even prevent the onset of motor symptoms. There are now over 15 Centers across the US conducting this study. Anyone not diagnosed with a neurological disorder is encouraged to participate. This is a unique opportunity for friends and family of those touched by Parkinson’s to help in the research process.

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Researchers are looking for participants over 60-years of age who are free of neurological disorders. To learn more and to register for the study you can call 1-877-401-4300 or go to www.parsinfosource.com. Gene Transfer Phase 2 Clinical Study for Parkinson’s Disease This Phase 2 clinical study delivers neurturin (NTN), a protein related to glial cell line-derived neurotrophic factor (GDNF), to both the putamen and substantia nigra using a genetically engineered adeno-associated virus (AAV) type-2 vector. This compound has demonstrated neuroprotective and neuroregenerative properties in rodent and nonhuman primate models of Parkinson’s disease. In previous human studies, AAV2-NTN was found to be safe and well tolerated. The study consists of a 30-day baseline phase, an inpatient hospital stay in which patients are randomized 1:1 to receive the gene transfer agent, delivered via stereotactic neurosurgical procedures to the putamen and substantia nigra, versus sham surgery. Patients are them followed for 36 months. When the first 12 months of the phase 2 study are complete and the blind is broken, patients randomized to sham surgery will be eligible to receive active treatment, if it is found to be safe and effective. There is no cost to the patient for this study. Key eligibility criteria are: ● Bilateral, idiopathic PD with motor fluctuations despite a robust response to optimized medication therapy ● Bradykinesia and at least one of the following features: resting tremor or rigidity ● Good postural stability in the “on” state ● Age 35-70 years ● Overall good and stable health ● Normal cognitive status and no major affective disorder ● No previous intracranial procedure to treat PD (e.g., pallidotomy, DBS) The study is being conducted at the University of California San Francisco by Dr. Jill Ostrem and Dr. Nicholas Galifianakis in Neurology and Dr. Philip Starr and Dr. Paul Larson in Neurosurgery. Physicians who require further information or wish to discuss patients who might potentially qualify for this research program should contact Dr. William Marks by email at [email protected].

Upcoming Educational Events

Parkinson's Disease in Older Patient, EES/PADRECC Audio conference on September 2, 2010,

http://www.parkinsons.va.gov/

2010 National VA PD Consortium Conference, September 8th-10th, 2010, San Francisco, CA

World Parkinson Congress, September 28-October 1, 2010, Glasgow, Scotland:

www.worldpdcongress.org.

7th

International Congress on Mental Dysfunction & other Non-Motor Features in

Parkinson’s Disease (MDPD 2010), December 9-12, 2010, Barcelona, Spain.

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Telephone Tip: When calling our office,

you can skip listening to our phone message

and go directly to leave your message by

pressing the # key.

Northern Nevada Support Groups

Contact information: 775-328-1715 or 888-838-6256 ext. 1715

Website: www.reno.va.gov/parkinsons/parkinsons.asp

Spanish Springs July 7 August 4 September 1

First Wednesday Sue Meador Bonnie Evans &

Maryanne Robison Paula Forgy

10:00 am Medicare Q & A Finance 101 Exercise and PD

Cascades of the Sierra, 275 Neighborhood way

Carson City July 13 August 10 September 14

Second Tuesday Sue Meador Bonnie Evans &

Maryanne Robison Chris Shea, RPH

2:00 pm Medicare Q & A Finance 101 Are Your Medications

Interacting?

Carson City Senior Center, 911 Beverly Drive

Reno July 9 August 13 September 10

Second Friday Sue Meador Bonnie Evans &

Maryanne Robison Keri Putnam

2:00 pm Medicare Q & A Finance 101 NV Talking books

Atria at Summit Ridge, 4880 Summit Ridge Drive

Reno July 20 August 17 September 21

Third Tuesday Sue Meador Bonnie Evans &

Maryanne Robison Keri Putnam

7:00 pm Medicare Q & A Finance 101 NV Talking books

Neuroscience Institute, Suite 325, 10085 Double R Blvd

Elevator in lobby

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Contact Information

APDA Dedicated Veterans Information and Referral Center

1000 Locust Street

Reno, NV 89502-2597

Telephone: 775-328-1715

Toll Free: 888-838-6256 ext 1715

Fax: 775-328-1816

Internet Site: www.reno.va.gov/parkinsons/parkinsons.asp

Intranet Site: wwva.reno.va.gov/parkinsons/parkinsons.asp

Email: [email protected]

[email protected]

Coordinator/Editor: Susan Gulas, RN, MSN and Laurel Lindstrom, RN, MS

Medical Director: John Peacock, MD, PhD

APDA National Office

135 Parkinson Avenue

Staten Island, NY 10305-1425

Fax: 1-718-981-4399 Telephone: 718-981-8001 Toll Free: 800-223-2732

Website: www.apdaparkinson.org

Disclaimer:

The material in this newsletter is presented solely for the information of the reader. It is not

intended for treatment purposes, but rather for discussion with the patient’s physician.

Permission is granted to reprint any article in this newsletter provided that proper credit is given to

the author and source: APDA Information and Referral Center, Reno, Nevada.

Lending Library

The I&R Center has a lending library which includes books,

videos, and DVD’s. A list is available just contact us at the center.

We are working on improving our email communications and

saving paper, so please email us or call us with your email address

and remember to let us know if it changes. Thanks!